Friday, 31 May 2013

St Luke's hospice today

Yesterday was a lovely day, the sun was shining and I had friends who came to visit. Linda and heather are good friends. They came over and we chatted in the garden over a coffee. 
Linda came over late morning. She had just lost her lovely cat, so sad as they are such a part of the family. It was lovely to see her. 
Heather came over in the afternoon, she was laden with goodies, home baking at its  best, I managed a piece of her lemon drizzle cake.
I had done a lot yesterday, for out about.  My breathing is still difficult but is improving every day.
I didn't have a very good night, I need to sleep and it isn't happening.

Last night was the same, I didn't sleep well. I feel so shattered today. Siobhan's friend took me into st Luke's, I met my friends Ali and Ann here. Jayne came in a little later. 
Was lovely to hear a nurse who is looking after me talk about my dad as she had nursed him. I feel he is close by now. 
Going to close now as I am tired but I will update when I can. Thank you for all your support x x x

Thursday, 30 May 2013

Getting support.

I have been busy today with phone calls, sorting out the car as Livi's hand brake is slack.
RAC will come out to the house and do that.

I took a sleeping tablet last night and it affected my breathing so that was a bit frightening.

I have been in touch with St Lukes, our local hospice and will be going in tomorrow at 11:00am.
It is for System management. My head is a mess as I feel terrified that if I fall aslppe I won't wake up as I don't feel I am confident and in control of my breathing.
The cats will have to be dealt with as when I do get to sleep, Storkie boy decides that 5 am is the right time for breakfast. He gets close up to my face and at the moment I can't cope with that.

I am getting oxygen in the house, something else that will help my psychological state.

Short and sweet today.

Tuesday, 28 May 2013


I had a visit from my friend Ann today, She came over, at my request, to be here when my GP turned up as I had rang to have a home visit today.
He arrived and was quite certain that all my issues were with Mesothelioma. I asked about having antibiotics IV as the hospital have aid he would need to refer me and that the GP could access all the services to support me.
I tried to explain that I was under no illusion about my illness and I can live with mesothelioma. He was very blunt, telling me the worst, I was heartbroken. I don't feel ill, I am trying my best to eat, I stayed in bed all day today at Siobhan's request. I am doing the nebulisor 3 - 4 times a day. I have had productive muck 4 times today, all green in it. That is telling me that the chest infection is still ongoing. He wasn't happy about me having IV antibiotics. He seemed surprised about what the hospital has said yesterday.

When the GP had left, Ann and I burst into tears, I kept saying over and over again, this can't be it. I feel well in myself, my weight is good. A chest infection is a tough thing to get over for anyone. The two need to be separated, deal with the chest infection, if it is Theo kicking up, that has to be a separate issue. Last night at the hospital I was asked about an asthma attack and if I had had one before, I never have. I have 4 respiratory problems going on, no one should assume any one thing is making all the problems.
After the GP had left, the nurse from the local hospice came over. I am not end of life yet, I need support with my breathing. I am hoping to get into the hospice for some symptom management. The hospice are so very helpful and when she had left i felt so much better.

Onwards and upwards, I have done well today with my diet, 3 biscuits, 2 complan drinks and water while trying not to aspirate. I hope I can prove my GP wrong. I want to walk into his surgery and show him it isn't over yet!!!!!

What a nightmare.

I haven't updated for a few days,it has been so hard to get the energy to do very much. My breathing is the worst it has ever been. I feel very let down by the system at the moment. I went into hospital again last night only to be sent home and told my GP needs to put things in place. I have him coming out for a home visit today and will get something in place. Siobhan is doing everything, she is in great demand, my arms,my legs, my support. I am totally reliant on her.
I have a chest infection thats needs conquering now, it would help if someome would listen to me, I have been saying this since February.I need a voice, I am doing it all amd am so tired, I need someone fighting my corner.
I have got a nebulisor at home now but it doesn't seem to be enough. I have been told I need to request oxygen at home. I will have to ask about that as well.

Thank you my warrior friends for the lovely flowers I got today. They have brightened up my day.

Friday, 24 May 2013

Massive catchup

I have had such a time of it lately, I have been too tired to write the blog. i am going to try and catch up now.
I have been struggling with breathing for a few weeks now and not seemingly getting on any further.
I am tired although the pain has gone, I have more of an ache in the top right of my back, like a finger being pushed in and staying there.
I have been nebulising for the past few days which has helped a lot but not much further ahead.
Siobhan has been my legs, my arms and everything else round the house. I don't know what I would do with out her to be honest. I have had great support from my friends, Mandy took me out for a little break on Monday which I thoroughly enjoyed and will go out again next week.
I am out with Chrissy on Sunday and now have a wheel chair until Tuesday. Jayne has been wonderful also, offering up her soup and bread and a meal at hers. I couldn't go to hers this week as I can't manage the steps.
I woke up this morning, had a cough, whoopee.... how thrilled was I to see a lovely shade of yellow with my mucus this morning (apologies for being graphic) To top that, it is a bank holiday weekend so I will have to ring the Drs.
I had a home visit with my Dr, she was wonderful, happy to give me a script for more antibiotics.
My lovely legs, siobhan, came with me to pick them up.
All sorted for the weekend.

Good luck to Kieran who is doing his Relay for life walk. He does this every year in Cornwall.
Such a quick blog, have a lovely weekend everyone, thanks for all your good wishes : )

This morning outside my house : )

Thursday, 23 May 2013

My dream

My dream.

I typical isn't it, I go off to sleep beautifully on 22nd may at 10:30 pm.

I am tired so drift off quickly.

At last, a good nights sleep in my bed.

Next thing I know I am asleep and I am laying here, my left lung has such a sharp pain in it.

I can hear rumbling, the pain is bad in my left side.

I can see a thorn like thing coming out of it.

I am panting, I can't breath, I need the nebuliser.

I start to tell myself there is pain and I am so out of breath when then I realise something. (I am still dreaming at this stage and can still hear this rumbling noise)

Someone is messing with me, I keep telling myself this over and over again. I am saying the f word though just to make it more real. I was angry and repeating it over and over again, someone is f ing with me.

I have the pain, the breathlessness, the thorn like thing, the rumbling.

As I start coming out of my dream, I tell myself that my pain is in my right lung and not my left. The rumbling is still going on and I am coming out of the sleep even more now.

It's 1 o'clock in the morning and my neighbour has decided this is the right time to put their wheelie bins out for collection.

The thorn like thing is a feather like spike , I was talking about the film the black swan with my friend earlier in the day.

I woke up completely, still feeling like I was out of breath.

I told myself to stop it as the pain would be in my right lung. I did and the pain went, no pain, no spike But still the rumblings from my wonderful neighbours.

Thanks guys. Now I am awake. I am not out of breath atall. There is no pain in my left lung, none in my right for that matter, wide awake and writing this. I could do with a coffee but don't want to venture down stairs as all is good with the breathing. I have to try and get back to sleep ...... Bummer : (

Wednesday, 22 May 2013


Lisa with her dad, Graham. x x x x

It is with sadness that I heard of the loss of another courageous warrior.
I met and became friends with Graham's daughter, Lisa, through facebook for a while now and have followed Graham's journey.
My heart goes out the the family as they start the next chapter with out him.
We have become a family ourselves with the meso warriors always there for each other and I hope Lisa, Jeanette and all the family can gain comfort in the fact that we are there for you all when you need it. It is one of the hardest things to do in life, letting go is so painful. He will always be with you, watching and holding your hand when you need it.
Sending you all love and strength at this very painful time x x x

Another bad night

I am so tired this morning. I took such a long time to get to sleep, my mind just can't switch off. I am so worried about going to sleep and not being able to breathe. I am terrified I won't wake up. My confidence has been knocked so hard. I can't get over the issue of not being in control of ,y breath, I want to know that I am improving but that isn't what i a hearing from my family and friends.
I went to st Luke's palliative care yesterday, I have stopped taking the tanpantadol,as I felt trapped inside myself if you can understand what I am saying , maybe going cold turkey on it didn't do me any good. This feeling could be symptoms of coming off the drugs too quickly.
I don't like sleeping in my bed for some reason and laying down brings on more fears.  I am so paranoid, maybe paranoia Ian a side affect too. I wish it would go.
I was told by dr Mary that I could start chemo. I need to speak to dr D but I think this will help with my. Confidence as I will feel that here is something inside me bashing theo and putting him back in his place.
I am so disappointed that the chest infection wasn't dealt with in the first place and was left so long. I have been let down by the system and left with all this to deal with as well as my mesothelioma. I have to get through it. I don't feel this is my time over, I don't want it to be.

Monday, 20 May 2013

Oh what a night.

UI was all twitchy last night, feeling so trap inside my body because of the opioids I am taking. One tablet 100 mg in the morning and 100 mg in the evening with a top up of 50 mg of Tanpentadol  (Palexia) if I need it. I googled the side affects and, again, it is a respiratory depressant. I don't want my breathing compromised anymore, I have been doing breathing exercises and trying my best to get mobile. I feel like I am blocked in but I have now found the key to get out, I hope.

Last night I decided not to take the top up. The pain had started and I was looking for a hot water bottle. I went onto facebook and said I needed a hot water bottle. One of my warrior sisters in Australia suggested getting a plastic drink bottle and filling it with hot water......  EUREKA....... of course!!
I looked in the kitchen and found a conditioner bottle. I washed it out and filled it with hot water, it worked, the pain went and I haven't needed a back up tablet. I am not going to take the 100 mg tablet this morning. I am very twitchy though, my fingers shake and sometimes I can't control them and amhitting buttons on the computer for no reason. Not good, I hope it stops.
Pain started again so a filled my bottle again, with the heat, the pain went. I am feeling it is working, only time will tell.
Thank you so much Vickie in Australia for your suggestion. I have had pain relief from heat so I know what I will be doing from now on.

Saturday, 18 May 2013

Feeling much better.

The weather in Plymouth is beautiful, it is like a Summers day. The sun makes me feel so much happier, Kieran has gone to his dad's, he has been very helpful while I was in hospital and while I have been so ill. He does his own lunch and gets himself off to school. Siobhan has been helpful too, we went to the shops this afternoon, this was my first time out since getting out of hospital. My breathing is still low, I am hoping it will pick up a little more each day.

I am going to have a YAY for the DAY.

This is a phrase Barry, a warrior friend from Australia used to say everyday. He had gained his wings a few years ago. He had a YAY every day. I am still in touch with Lyn, his wife.

So my YAY is a big thank you to everyone who is supporting me. I have had the most frightening experience of my life. Not being able to breath is terrifying and I am now trying hard not to panic when I do go out. I have lost a lot of confidence with this. I look at the stairs like they are the biggest challenge in the world. I went to the local shop with Siobhan, we went in the car, wonderful to get back in Livi, and we went onto to the supermarket. I took a slow walk around the store while using the trolley for support, we managed to find one that worked. We walked around slowly, well done me : )
I was so proud of myself. Poor Siobhan had to listen to my steroid head rant on. I natter away when I am on steroids, I am a natural natterer anyway so this is even worse.

This is the lovely blue sky outside my house today and here is the proof. My friends up North have grey clouds and rain. This weather has been really strange, never the same everywhere.
Snow last week on Dartmoor, rain, hail and now sun. I hope it continues and spreads itself all over the country : )
I am having a drastic moment. I am changing my hair, when I start the chemo it will come out anyway so I thought I would colour it again and get a short haircut later when I speak to my hairdresser and TOF friend, Jacqui..

I have Pilar cysts coming up on my scalp so am going to look like a Furby who has been splashed with water .... bumps all over my head.   : )
They will have to be cut out at some point, something else to deal with but very minor compared to what is going on at the moment.

I hope everyone has a lovely day tomorrow, I hope the sun shines for you x x

Thursday, 16 May 2013

2,000th post.

Well 2,000 posts on my blog and I am going to dedicate to my wonderful children.

Thank you so much Siobhan and David for looking after me, I really don't know what I would do with out you. I promise to be a good mum and rest all weekend, no challenges, I love you and Kieran so much and am so lucky to have you in my life. Richard isn't here but I know he is thinking about me, love you too Rich. I feel like the wealthiest person in the world and must have done a good job having such wonderful people around me. 

How many 16 year olds make their own lunch, get them selves off to school on their own, make their own meal and don't complain about going to the shop and are so helpful to everyone in the house. There are some around, Kieran is one of these, thank you so much Kieran. You are a star. Well done, be proud of yourself.

You all have so much to be proud of, Kieran has had a tough time and is coping well with everything. 

2,000 posts and what a way to celebrate. Thank you so much all of you.

At home.

I am home at last, breathing isn't great but better than it was. I have a mountain of tablets to take, pain killers, antibiotics, anti sickness. 
Siobhan, Kieran and Siobhan's boyfriend, David, have been wonderful, so helpful. 
I did push myself today to get motivated, really wanted to walk out of the hospital fighting fit. It was never going to happen so I have to rest and listen to my body.
I have had so many lovely messages of support, cards, flowers, so many people wishing me well. Thank you everyone of you. A couple of emails, from Robert in Kent and from Irene in Scotland, So sorry I haven't replied much. I will get back to you. 
I know you will both understand, I need to get myself up and at them again, 


Flowers from warriors and ADAO (Asbestos disease Awareness Organisation) Thank you so much.

Windmilll from Rachel and Photo taken by Rebecca with a card. Such a talented photographer. Thank you so much girls x x

Wednesday, 15 May 2013

Lovely day yesterday.

I have had some lovely visitors come and see me over the last few days. Rachel and Rebecca came in, Rachel gave me a little windmill, it is so sweet and Rebecca and photo she had taken of a damsel fly. It was beautiful, she is such a talented photographer. Siobhan had been in, she is a sweetheart, I forgot my pills and she brought them in for me. My friend Tina who brought me in on Monday. Thank you all of you x x I hope I haven't forgotten anyone, if I have, I do apologise.

Yesterday was a cyber visiting day, I was skyping, Skype is a phone call on the computer, Mavis in the UK, Linda, Suzanne and Ann in the USA and dear Lou in Australia who couldn't do it due to bad weather. We missed her. We all chatted and had a coffee together. It was wonderful, while we were chatting flowers arrived and chocolates from them, what a surprise, thank you so much, what a lovely thought x
To top it all, Siobhan arrived, it was a wonderful morning.

I am feeling much better, my breathing is better, I feel I have more capacity. Getting on top of the chest infection has been the thing today and as that as gone I find the pain has gone too. So, it wasn't the meso causing the pain, it was the muck.
I am walking a lot further than before but can't get the fear of not being able to breathe out of my head, climbing stairs is terrifying me at the moment. The phycological side of cancer can be worse than having it at times. I think I ned to talk to someone about it.

I want to say a big THANK YOU to all those people who are supporting me, the blog helps me a lot with dealing with this illness. There are those that will try and tear you down but they just make me stronger, fuel my fire. Thank you again to those lovely people, family, friends, warriors and my children for helping me get through this. This chapter has been a hard one.
I am in for my procedure today to close off the TOF, I hope I can go home tomorrow and talk about starting chemo again. Once that is out of the way, I want to get back to work.
It would be so nice to have a normal life : )

Tuesday, 14 May 2013

Back in hospital.

I came back in hospital yesterday, I have my dilatation on Wednesday. This is a procedure to widen the oesophagus because mine has decided to not allow me to eat solids. This is a normal occurrence for a lot of people with TOF ( tracheo- oesophageal fistula).
I hope that Wednesday I can close the fistula for good as it causes me a lot of problems with chest infections and choking.

I had Oxynorm last night for the pain as I had run out of my usual tablets and it was too late to request anymore. I had a horrid nightmare, al my family were zombies and we were on Plymouth hoe in the moonlight. I wasn't sure if I was one or not. I did know one thing though, that I felt stunning in my floaty nighty, we all looked good : )

It's 3-30 am so I thought I w,old update. I am still a little shaky as the dream was scary, I will get back to sleep soon. In the mean time, I am looking forward to getting tomorrow out of the way and to improve my breathing so I can go home, that is my biggest worry.

Thank you to all the people who have sent lovely messages of support, each and every word stokes my fire to win this battle. You all inspire me, so glad I have so many wonderful people in my life, I am so lucky x x x

Saturday, 11 May 2013

Back home.

I was admitted to hospital on Thursday by my GP. My oncologist suggested it was the right thing to do as my breathing was difficult and the TOF was playing up, I am choking on solid foods.
I am all booked to have a dilatation on Wednesday. A dilatation means the oesophagus will be stretched to it's normal size so I can eat solid foods again. The consultant is also going to try and close the TOF. I hope it works.
I am trying to get my breathing back up, I think it has improved but it is difficult to tell.
I came home today, managing to walk from the ward to the main entrance, considering I had a wheel chair to the ward on Thursday, I think that is a bog improvement. I still need to take it easy.

I have come home and will go back in on Monday. Kieran is back home after his time away, he has enjoyed himself.
Siobhan has been busy making me soup and keeping me under control : )
I have visits from my lovely friends, thank you for taking the time to come in.
Not much more to tell.

Thursday, 9 May 2013

Nearly at 2,000 posts.

I am hoping that when I get to my 2,000 th post I will be in a better state than I have been.
It has been a struggle since February to get my chest infection sorted out. I feel so let down by Dr's and medical staff who saw no urgency at all in treating my chest infection. I am now at a point where I hope I can recover.
At the moment everything is a challenge, going upstairs, walking around the house, trying to do a little bit of house work. Not only is it frustrating, it is frightening. Breathing determines wether I live or die, it is one of the most important things we do as human beings.
In February I was having reactions to antibiotics, I have since found out I am allergic to penicillin. The only way I got any antibiotics was to be so ill that I had to be taken into hospital. No one would prescribe them.
I now have some that are, hopefully, going to do the job.

I am thinking of our little wonder woman in america as well, Janelle is having such a rotten time at the moment. Our mesothelioma community is wishing her well and hoping she will be home soon and she gets better very quickly. I don't think anyone appreciates how scary this all is until it happens to them.
Get well soon Janelle honey, we all want you home and healthy as soon as possible x x

I went out last night, just to my friend Jayne's house for something to eat. I met Chrissy and Cheryl there too who looked after me well. I managed jacket potato, I took things slow as I don't want to be back in hospital again with aspiration pneumonia.
I managed to get down all the steps at her house, Siobhan was very worried about me. I hope I assured her I would be alright. Going up the steps was a different matter. I did one flight at a time and did them very slowly, there are 3 flights at Jayne's.
Jayne did offer to carry me up the steps but I think doing it myself was more of a challenge and it will keep me moving.

I am supposed to be checking out the college that Kieran wants to go to today, that is not going to happen, I won't be able to walk very far so will have to cancel it.
I will have a day at home, home made soup for lunch I think made by Siobhan, can't get much better than that. I am drinking lots of Complan too.

I had some lovely things in the post yesterday, I am so proud of our Mesothelioma community on Facebook, we all look out for each other.

Thank you Mary for this lovely little note book. It is beautiful x x

Thank you also to my friend, Rachel, for this lovely card.

...And thank you so much as well to Shelby who sent this lovely pendant. People are so very kind and generous, Shelby lost her husband to mesothelioma, she makes lovely pictures and asks others to pray for those who are going through a difficult time. She has turned a very miserable negative into a wonderful positive. Thank you Shelby for all you do for others. It is appreciated I can assure you x x x

Wednesday, 8 May 2013

Information about Aspiration Pneumonia.

Aspiration pneumonia is inflammation of the lungs and airways to the lungs (bronchial tubes) from breathing in foreign material.
Aspiration pneumonia occurs when foreign materials (usually food, liquids, vomit, or fluids from the mouth) are breathed into the lungs or airways leading to the lungs.
This may lead to:
  • A collection of pus in the lungs (lung abscess)
  • Swelling and inflammation in the lung
  • A lung infection (pneumonia)


Risk factors for aspiration or breathing in of foreign material into the lungs are:
  • Being less alert due to medicines, illness, or other reasons
  • Coma
  • Disorders of the esophagus, the tube that moves food from the mouth to the stomach (esophageal stricturegastroesophageal reflux)
  • Drinking large amounts of alcohol
  • Medicine to put you into a deep sleep for surgery (general anesthesia)
  • Old age
  • Poor gag reflex in people who are not alert (unconscious or semi-conscious) after a stroke or brain injury
  • Problems with swallowing
Acidic material that is breathed into the lungs can cause severe lung injury. However, it may not necessarily lead to pneumonia.


Other symptoms that can occur with this disease:

Exams and Tests

A physical examination may reveal:
  • Crackling sounds in the lungs
  • Decreased oxygen
  • Rapid pulse (heart rate)
The following tests may also help diagnose this condition:


Some people may need to be hospitalized. Treatment depends on the severity of the pneumonia. You may receive antibiotics, which treat bacteria. Some people may get special antibiotics to treat bacteria that live in the mouth.
The type of bacteria that caused the pneumonia depends on:
  • Your health
  • Where you live (at home or in a long-term nursing facility, for example)
  • Whether you've recently been hospitalized
  • Recent antibiotic use
You may need to have your swallowing function tested. Patients who have trouble swallowing may need to use other feeding methods to reduce the risk of aspiration.

Outlook (Prognosis)

The outcome depends on:
  • The severity of the pneumonia
  • The type of bacteria causing the pneumonia
  • How much of the lungs are involved
If acute respiratory failure develops, the patient may have a long-term illness or die.
Many people who have aspiration pneumonia have other serious health problems, which may affect the outlook for recovery.

Possible Complications

When to Contact a Medical Professional

Call your health care provider, go to the emergency room, or call the local emergency number (such as 911) if you have:
  • Chest pain
  • Chills
  • Fever
  • Shortness of breath
  • Wheezing


  • Avoid behaviors that may lead to aspiration, such as excessive alcohol use
  • Become aware of the risk of aspiration

Alternative Names

Anaerobic pneumonia; Aspiration of vomitus; Necrotizing pneumonia; Aspiration pneumonitis


Donowitz GR. Acute pneumonia. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 7th ed. Philadelphia, Pa: Elsevier Churchill Livingstone; 2009:chap 64.
Torres A, Menéndez R, Wunderink R. Pyogenic bacterial pneumonia and lung abscess. In: Mason RJ, Broaddus VC, Martin TR, et a. Murray & Nadel's Textbook of Respiratory Medicine. 5th ed. Philadelphia, Pa: Saunders Elsevier; 2010:chap 32.

Update Date: 2/19/2011

Updated by: Linda J. Vorvick, MD, Medical Director, MEDEX Northwest Division of Physician Assistant Studies, University of Washington, School of Medicine; and Denis Hadjiliadis, MD, Assistant Professor of Medicine, Division of Pulmonary, Allergy and Critical Care, University of Pennsylvania, Philadelphia, PA. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
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Thank you so much Mavis for finding this, it explains it very well for those who don't know what it is all about.

Tuesday, 7 May 2013

South West Mesothelioma Support Group Meeting, Wednesday 8th May.

We have our monthly meeting at Derriford Hospital, Mustard tree at 11:30am, tomorrow morning.
All are welcome, we are a very supportive group of people who enjoy helping others.
If it's your first time, please don't be afraid to come along, the welcome is warm and friendly.

Another adventurous couple of days.

It has been crazy again, I have been taking it easy, not much I can do really. Kieran is away with school for the week. I stayed in most of the time, no driving as such. I went to Chrissy's for tea yesterday, I managed 3 flights of stairs, stopping before attempting each one. We had cauliflower cheese for lunch, it was lovely. Jayne came over too which was great. After lunch and a natter, we had a quick drive around the Hoe, such a lovely day.
When I got home I have some fruit and a yogurt for tea with a glass of water. Big mistake, I choked on the water and aspirated which means the water went onto mt lungs and closed off my airway.

Here we go again, an ambulance and back in hospital. I really didn't want to go in again but I
had no choice.
Siobhan quickly gathered up a few things and I was taken to the trauma unit this time, First time I have been in there. The staff were brilliant, I managed to get the breathing sorted out with a nebuliser and oxygen, a bi-pap machine was mentioned but not used.
I went onto the ward at around 11 pm, it was so busy, not much sleep, I tried to catch up on my sleep but that was never going to happen.
The Dr's came round to see me. They asked about the stents I had out in 3 years ago. I told them they were put in the oesophagus (food pipe) to seal off the TOF but this didn't happen as they both slipped, there was nothing there to hold them. The Dr then said he wasn't talking about the oesophagus, he was taking about a stent in the trachea (windpipe) I told him this was not an option as I have an underlying respiratory condition and anything in the trachea could compromise my breathing.
I told him I was seeing Dr G in Nuffield, not sure when. I was told I would have to see the gastro Dr. Confusion all round, I couldn't get dressed, I had washed and put on a glorious NHS gown with a pair of power knickers, well incontinence pants as there was nothing else. I got changed and called Siobhan, told her not to rush as I was waiting to see another Dr.
Nope, crossed lines again, the gastro Dr would be in touch with me. So who will be in touch? Dr G from Nuffield or the NHS Dr in Derriford?
I called Siobhan again and asked her to bring in my clothes.

Siobhan came in, I did a quick change out of my lovely NHS night gown and off we went. I got home, and was so tired, I went straight to bed and to sleep. I really needed that.
I have to pick up a prescription from the surgery today for anti biotics and for Complan, a milk shake drink to build myself up as I am not eating properly. I will have to be very careful with water, something I know I need to drink regularly. What a palaver, Lets hope the next few days are much better.

Saturday, 4 May 2013

TOF playing up today.

I didn't get to sleep until 4:30am this morning, I had a lot of things running around my head. I feel so scared at the moment, afraid of leaving my family and really not ready to.... should I say it ...... Die  : (
I want this miserable black cloud to shift.
It has been on my mind about what was written in my notes in 2010. I hope I can shift it. It said that I have disease in my oesophagus, this was written by the stent Dr. He was not happy about me taking the stent out and may be it was scare tactics to keep it in or jusify keeping it in. I was always told there was no disease there to hold the stent in place, I had 2 and both has slipped causing me a lot of pain which is why I wanted it removed.
No where in my reports has it said that there was disease and Dr TOF in Taunton told me there were no blockages as he had done an endoscopy.

I am trying to get my head around it still. I know I have to move away from it.

I had cereal for breakfast, I managed that alright, I had a banana, yogurt, Actimel drink and a Complan drink for lunch which I managed. Tea time I had a sweet potato curry which Siobhan had made. She had put lentils in it which irritated my TOF and caused aspiration. It took me a few minutes to get myself together. So it will be soft diet completely until I have a dilatation and once that is done I hope it helps with the breathing, it is so much better than it was. This has been the most frightening experience so far.
I hope I hear something from the hospital very soon as I cannot afford to lose anymore weight.

Well done Kieran, he has an article in the paper with his dad all about the relay for life for cancer research. I am not sure what the journalist was thinking as he seems to have mentioned me 3 times??

Kieran doing his Xbox marathon, He raised over £200 for cancer research.

Good luck to Alex with his snooker marathon and to the Misfits team.

Friday, 3 May 2013

Looking back on what the Stent Dr said.

I have been thinking so hard about what the Dr said today about an entry in my notes from May 2010.
I have added the entry below, there is no mention of disease.

"I went into hospital again on Friday as the stent was giving me so much pain. I was certain it had moved and I was right. My oncologist's radiographer called him to tell him the stent had moved and was not covering the hole. He came and told me yesterday morning. I was booked in for another endoscopy yesterday to remove it.
Before I went down to theatre, the surgeons right hand man, Dr BD came to see me to get the consent form signed. He asked me about the stent, I said I had been told by Dr D the stent had moved, Dr BD told me in had not. I said I still wanted it removed as the pain was too much. He then informed me that if it was removed the fistula would cause me problems. I would have continuos bouts of pneumonia and all anti biotics would stop working and I would be in a fatal condition. He was acting like a bully, 4 times I told him I wanted it taken out. It didn't end there, I rang my oncologist who rang them and put them straight, telling them it had moved. As they didn't have the CT results, they couldn't see it.
I went down to theatre and just before going in the surgeon advised me it had shifted about a quarter of an inch. He said he could pull it up or take it out.... once again I said take it out.
I was so upset at them for trying to make me keep it. My oncologist said they don't like failure. I don't see it as failure though, I see it as learning. If anyone else has to go through this, the surgeon now knows that it maybe painful for them.

On another note, the CT scan revealed that the meso had not changed. Theo has been great. I hope he continues to stay where he is".

I am afraid to ask Dr D about it incase he confirms that it is in the oesophagus. Why oh why when I have a good day is there something else to kick me in the teeth? I sure I am sticking with food because I have a stricture, If it was in the oesophagus, surely over the last 3 years it would have progressed and be showing up on the scan?
Oh well, nothing I can do about it. I want to know but I don't want to know through fear of it being confirmed.

Brilliant appointment with the TOF Dr.

I had an appointment this afternoon with the Dr who is now dealing with my TOF (Tracheo oesopahgeal fistula).
He asked me many questions about the history of the TOF. I am sure I was born with it as I have always choked on liquids. I can remember as a child that I coughed and spluttered on dilute juice.
TOF means that I have a fistula, a tube, connecting my food pipe and windpipe. It is an abnormality.
My son, Richard was born with the same condition, his was a variation to what I have.
He needed a major operation the day after he was born to correct it.
A nightmare time for my family and I. Siobhan was about 2 1/2 and coped with it all very well.

I am figure 4 (4% of 100 babies have this variation)  Richard has figure 2 (84% of 100 babies have this variation) It affects 1 in every 3000 babies. Both Richard and I were very lucky as we didn't have any of the other difficulties that go along with tracheo oesophageal fistula.

The appointment went very well, it looks like this Dr TOF is going to try and close it. He is liaising with Dr TOF in Taunton and with my oncologist.  I was very surprised to hear that the Dr who put in a stent (May 2010) when the TOF was first found said I had mesothelioma in the oesophagus. This has never been reported on any CT scan reported by Dr TOF when he did an endoscopy. There were no blockages, this was also confirmed when I had my last CT scan, no blockages. The Dr back when the TOF was diagnosed wasn't happy with me having the stents out so I am not surprised he wrote that. Fear tactics with some Dr's.

I am very happy with the way things went. I am not sure when I will have the procedure, it would be great if it is before I start chemo, we shall see.

My day has been very good, my breathing is a lot better. After my appointment, I picked Siobhan up and we went to buy some lamp shades and ceiling roses so we can change our awful 1070's porno lights and dimmer switch. It is the cheap gold looking lights, I have hated them since we moved into the house. We went to B and Q, well customer service isn't their strong point. I asked where the ceiling roses were. The man I asked pointed and said "the back wall", well where ever they were they were not on the back wall. We were going to give them our custom, we decided against it and went off to home base where we found exactly what we wanted.

I was so pleased that when I came out of the shop and sat in the car I wasn't gasping for breath. I have more capacity, I know I have. The pain killers are working perfectly and I am resting when I need to.

Feeling better

Another beautiful day in Plymouth, the sun is shining into my window, it makes everyone feel so much better.
The pain killers i have got seem to be doing the job, much better than the Oxynorm and my breathing is better. I think I am improving, maybe it's me just being hopeful as Siobhan didn't seem to convinced that my breathing had changed, I like to think that I am getting better.

Siobhan, her boyfriend and I went to the local garden centre, her BF is going to sort the garden out. I bought an Azalea, such pretty little plants and lovely when they flower.
It was good to have a slow walk around there. I feel I have improved a lot as I wasn't as breathless when we got back to the car.
We went home, had some lunch and then back out to get a little shopping. I managed a slow walk, pacing myself and stopping when I needed to. I was proud of myself for doing as much as I did.
I didn't need any back up tablets in the night for the pain as all was alright. I had a good nights sleep.

Today I have an appointment with Dr G to discuss what will happen with the TOF. I am expecting him to say I need an endoscopy and a barium swallow. I know I need a dilatation as I am choking on some foods.
I am drinking Complan to boost up my diet. I need to put some weight on, I do so well and then when I go in hospital I lose it all because the food is so awful.

I hope all my warrior friends and family have a lovely day today, I know I will : )

Wednesday, 1 May 2013

Back home.

i have just got back from seeing Dr D. theo has grown , which I knew anyway as the pain is horrendous. I will be starting chemotherapy on Friday 10th May. I hope this gives Theo a slap upside his head.
I now have a plan of action, I feel like something is being done. I have waited since January to get started on the chemo. Because it has been left so long, the tumour has grown which is causing so much pain. I hope once I start the chemo things will get better.

I have also got an appointment to see the TOF Dr. I don't have any blockages on the scan, I do need a dilatation though which is a widening of the oesophagus. Dr G will also check for anything remarkable in the oesophagus and, as i have given the details, he will get in touch with Dr TOF in Taunton.
I hope this chemo works. I want to win this battle. Theo has had too long on his own and been left to his own devices. Well matey, sorry to tell you but your days are numbered.

CT results today

I will see Dr D this afternoon. I am hoping to get a plan of action and find out what the latest CT has revealed.

I had a good night, I took the pain killers. I did have break through pain so took a tablet to deal with that. All was well, I slept right through till the morning until a furry paw woke me up by poking me in the face.

I tried to be clever this morning, I took all my tablets apart from the slow release pain killer. I didn't want to be sleepy when I drive to see Dr D. Silly me, I had to take it, the pain was horrendous, Too much to take so I took it and decided that if I am sleepy, I will get a taxi. I am trying to put me first, get the pain out of the way, why suffer it if I don't have too.
It is a beautiful day here, the sun is shining and making me feel much happier than the grey, rainy skies we have had for such a long time.

I am relaxing now, the pain is going, thank goodness.

Theo I think I hate you the most right now. You are a rotten bastard, Is this punishment for kicking your butt? Well boy, your about to get another arse kicking, don't get too cocky. I hate you, I am ready for the next battle, beware the wrath of a warrior!!!!